Making My Own Way. Empowering Children and Teens Who Stutter. Jackie Biagini and Judy Butler. Fourth Edition, November, 2002

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1 Making My Own Way Empowering Children and Teens Who Stutter By Jackie Biagini and Judy Butler Fourth Edition, November, 2002 Copyright by Judy Butler, M.A., C.C.C. All rights reserved.

2 Dedicated with love and gratitude to Andie Biagini and Pat Doherty ii

3 TABLE OF CONTENTS About the Authors 2 Acknowledgements 3 This Journal Workbook is not a Cure..4 Preface... 5 To the Student..7 To the Adults..8 To the Speech Language Pathologist 10 Bill Walton by Pat Doherty.. 12 My Life Story 13 THE LEVELS...14 How to Complete Journal Entries.15 Level 1 Goal: To become familiar with journal writing Level 2 Goal: To include observations about the pragmatics of each entry.. 19 LEVEL 3 Goal: To find your own balance.. 21 LEVEL 4 Goal: To describe and manage physiological reactions to speaking...24 LEVEL 5 Goal: To achieve something big by taking one small step at a time.28 LEVEL 6 Goal: To select personal communication goals.. 33 LEVEL 7 Goal: To advocate for your rights as a speaker. 36 iii

4 MORE GOOD STUFF Dealing with a Bully by Amanda Phillips Feeling words Examples of Situations to Change Telephone Worksheet.. 42 Concepts for Stuttering Therapy.. 45 Important Notice for Parents Relapse.. 47 Bill of Rights and Responsibilities for People Who Stutter.. 48 Journal Writing for Children Who Stutter ISAD 2000 paper Additional Resources.. 54 SUGGESTED READINGS iv

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6 About the Authors Jackie Biagini is a parent of a child who stutters. She is also a Speech/Language Pathologist at the middle and high school levels in the Duxbury, MA public schools. Jackie is a graduate of Rutgers University with twenty years experience in public and private schools in Massachusetts, New Hampshire, and overseas. Judy Butler is a Speech/Language Pathologist ASHA Board Recognized in Fluency Disorders. She attended the two week residential Workshop for Stuttering Specialists sponsored by the Stuttering Foundation of America at Northwestern University (1992). She is a graduate of the University of Connecticut (M.A., 1981) and Brown University (A.B., 1975). Judy treated a variety of communication disorders in children at the Easter Seal Society of Allegheny County, Pittsburgh, PA for 10 years. In 1991 she began private work and in 1996 began working exclusively with families of children who stutter. 2

7 Acknowledgements Thank you, Andie, for the creative cover art. It is a joy listening to you talk. Thank you, Pat, for being the right person in the right place at the right time to get this collaborative effort started in Thank you, Sal Pace, for your kind, generous, and knowledgeable advice. Thank you Steve and Ken for cheering us on. 3

8 This journal workbook is not a cure Making My Own Way is offered as a tool to compliment a comprehensive therapy program for children who stutter. It is not a cure for stuttering. Neither does it stand alone as a stuttering therapy program. It is to be used at the discretion of the SLP to help a child understand that stuttering is a complex disorder. With this understanding, it is our hope that children can let go of some the guilt and blame they may shoulder because they could not just slow down and think before they speak as so many people have told them to do. Please send your comments and questions to 4

9 Preface Persons who stutter (PWS) need to control the direction of their speech therapy programs. Children and youth who stutter need adults to guide them in this process of empowerment. Those of us who take the risk of mentoring the next generation of PWS, need guidance ourselves. Making My Own Way (MMOW) is intended to help. We would like MMOW to foster mutual understanding between adult and youth so that together they can learn about the complex and confusing problem called stuttering. Furthermore, we hope it will help people discover that stuttering affects every individual in a unique way. It is our hope that this workbook will add to the meaningfulness of other therapy programs. We hope that MMOW will help persons who are not in therapy to move closer towards achieving whatever personal communication goals they may have. MMOW is a workbook for exploring an individual s point of view about stuttering. If you are an adult guide choosing to use this workbook, expect to hear stories of fear, shame, courage and achievement. You will hear stories of loneliness on the playground, fear on the school bus, panic over oral presentations in the classroom, battles with siblings, and pride in the mastery of skills other than speaking. There will be stories of joy while palling around with friends who don t care about speech. And if you are very lucky, persistent, and sensitive your relationship to youth will mature and deepen and you will find yourself growing up as well. MMOW reminds us that stuttering is not just bumpy speech. Listen carefully and you will learn about the realities of stuttering. Stuttering is a breakdown in the smooth communication between people. It interrupts interpersonal connections and interferes with personal growth. Stuttering is a burden youth should not bear alone. If we dare to care, we can lighten the load. We respect the role other professionals can play in a person s life. As we take this journey called MMOW, we need to be aware of our own limitations. There may be times when trained professionals in other fields should be consulted regarding a youth s thoughts, feelings, and actions. An obvious example is when a child is teased at school. School 5

10 personnel need to be consulted regarding school problems. Youth may also require the help of a psychologist, pastor, family doctor or other professional for related issues. We need to be open to the idea that personal counseling for ourselves may help us to maintain the healthy perspective necessary for dealing with the challenges that youth present us. MMOW will not be easy. But as a courageous mentor, you will confirm for young people that life has meaning in the obstacles it places in our paths. Go ahead, lend a hand so that we might learn from one another to make this world a better place in which to live. Even better, be a friend. 6

11 To the student Welcome to Making My Own Way. You are about to begin a familiar as well as unique experience for students who stutter. It is familiar because many of you keep journals in school and maybe even personal journals at home. Some of you may have read biographies, nonfiction, and fiction works which were written in journal form. It is unique because your time in speech therapy is often spent talking, not writing. You may be wondering how writing is going to help your communication skills. It can happen in a number of ways. You will begin by making very simple and short journal entries about speaking. The journal has seven levels. Each level will ask you to give your attention to a new and different idea about speaking. Everything is carefully explained at the beginning of each level. After each entry, you will talk to your speech therapist or parent about what you wrote. Sometimes there will be a lot to talk about, sometimes there may be just a little. That s OK. By talking with someone, answering questions, and sharing thoughts, you will learn many things about stuttering and how you can change what happens when you stutter. Talking about speech can be difficult, but it is the key to understanding stuttering and living with it no matter how hard it gets. This doesn t mean Making My Own Way will make stuttering go away. Maybe it means that the next time you raise your hand to ask a question in class you will remember an idea you got from the journal and use that skill or technique so you won t be nervous. You may remember that it s OK to stutter at the beginning of the question, because you know that you will get through it. It may even mean that your stuttering decreases in some situations. Everyone s progress will be different. We hope you will gain knowledge of yourself, the people around you, and how stuttering fits in. We hope you will learn what happens when you stutter, where it happens, and most importantly, how to manage stuttering and fluency. With the support of your parents and speech therapist, you can plan your personal goals and set out to achieve them. 7

12 To the Adults The Parent Pledge of Friends: The Association of Young People Who Stutter states, We will understand that stuttering has become a part of our lives, increasing the need for each of us to be flexible, curious, and open to new possibilities for ourselves and for our children. Making My Own Way is a unique and simple approach to a new possibility for you and your child. We recommend that you complete this journal with the guidance of a qualified Speech Language Pathologist. Also, please do some research on your own regarding how to be a sensitive listener. For example, take a look at How to Talk So Kids Will Listen and Listen So Kids Will Talk. It s OK to feel that you are not the right person right now to do this journaling with your child. Sometimes during the teenage years, it is helpful to have another adult mentor assist in this process. The journal is organized into several levels. Each page shares a similar format that is easy to follow. You may proceed in a very methodical manner, one level, in order. However, you will most likely follow a more spontaneous approach, depending on the specific situation and needs of your child. Time is probably the most significant factor in our busy lives. Set aside a few minutes for your child to write as often as he is willing or able. Writing can happen when you are together or apart. You will need to make time alone to talk about what has been written. Talk time can occur in conjunction with the writing or separately. In some instances you may find that closing the journal and simply having a conversation will be more productive. Your goal is to learn as much as possible about your child s communication in a variety of situations, and to find ways to assist him in the development of realistic techniques for management of fluency at those times. To encourage communication, establish a relaxed atmosphere. Respond to your child s ideas with non-judgmental reactions, such as I see, or a nod of your head, or rephrasing the statement (Your child writes/says, I was really nervous when the teacher called on me. Your 8

13 response, That was a tense situation, an anxious moment, etc. ) Ask open-ended questions such as What else happened? What do you think about that? Tell me more about what happened? Ask questions to elicit specific details and accept all responses in a positive and encouraging manner. You want your child to feel safe, accepted, and valued, no matter where the conversation leads. Above all, the journal writing process is meant to be positive, to evoke emotion, dialogue, and action. Going through the motions of writing, asking a few questions, and using only what is on the paper will be fruitless. Be open to your child s experiences and Making My Own Way will be productive and rewarding for you both. 9

14 To the Speech Language Pathologist Making My Own Way is a manual designed to provide both student and therapist with starting points for discussion about stuttering. It can help with the development of a student s ability to observe his own behavior, experiment with management techniques, and assess his own progress. Ultimately our students need to select their own communication goals, navigate courses to achieve them, and feel the personal power gained with each success. Stuttering therapy, especially in the school setting, is often limited by schedules and setting. Fluency is usually enhanced by the nature of the environment, small/non-existent audience, and an understanding and empathic therapist. Parents and teachers often report greater frequency of stuttering outside the therapy setting. This manual will bring you and your students to the outside via writing and conversation. The technical aspects of this tool include a simple, selfexplanatory format that can be used and understood quickly. Making My Own Way can be an efficient use of a small amount of time allowed for therapy in the school setting. The first five or ten minutes of the session can be devoted to writing. Most speech pathologists see students back to back with little time to transition from one group/individual to the next. The time spent writing in the journal gives you a few minutes to prepare materials and yourself to work with your student who stutters. At the same time, we emphasize that journal writing is not busy work. It is not meant to be just another ditto to validate therapy time. This is serious business. Writing needs to be completed with the help of a qualified speech language pathologist. We encourage you to be flexible with the journal. You can start almost anywhere in the first three levels and skip around if necessary. Use your judgment and follow the lead of the child. Your roles will be as confidante, guide, teacher, listener, reader, and counselor. You will discover that you have more experience and success with counseling than you realize. You do it all the time, not just with students who stutter. 10

15 When the journal elicits serious issues that you do not feel qualified to address, other trained professionals should be consulted. You are prepared to use Making My Own Way because of your professional background in all characteristics of communication skills. However, we also strongly encourage you to pursue continuing education in area stuttering. Please attend conventions sponsored by self-help groups such at Friend, Speak Easy, and the National Stuttering Association. Subscribe to their newsletters. Also, show respect for your profession by accepting consultation with the newly recognized specialists. Remember, it is in the best interest of our students. Making My Own Way is a dynamic step toward successful management of fluency disorders. It is designed to foster trust, selfconfidence, and interpersonal communication skills with set goals and plan to achieve them. 11

16 Bill Walton Written by Pat Doherty Bill Walton was an amazing college basketball player, possibly the best of all time. During his three years on the UCLA varsity, he was named Player of the Year three times and led the Bruins to two national championships. The 6 11 center played one of the great games in sports history in the 1973 championship game against Memphis, scoring 44 points while hitting 21 of 22 shots. Walton was the first pick of the NBA draft, selected by the Portland Trail Blazers in 1974, but injuries hampered most of his professional career, save for a few seasons. In , a healthy Walton led Portland to their only championship, and the following year, was named the most valuable player in the league. A crushing foot injury in the 1978 playoffs pretty much ended the glittering expectations that had been expected from Bill in his college days, and now sportswriters began portraying Walton as aloof and rude to the press. What they didn't know is that the star center suffered from a severe stuttering problem that made it very hard for him to give interviews. In 1985, Walton was signed by the Boston Celtics, and that season, he won his second NBA championship. The following year however, another foot injury forced him to retire. Working through his stutter, Walton emerged in the 1990s as one of the most recognizable and outspoken basketball commentators in television today. 12

17 My Life Story By Bill Walton is only one of many people who have succeeded despite stuttering. Now think about your own life: today, tomorrow, this week, next month, throughout high school, throughout life. We do not know all that lies ahead for us. But let s affirm that Whatever tomorrow brings, I ll be there. Now is the time to start learning how to influence the direction of your own life. 13

18 THE LEVELS 14

19 How to Complete Journal Entries The instructions for completing journal entries are brief. All the pages share a common structure. At each level, the content is modified to redirect the child s attention to a new concept. Level 1 is simple. Levels 2 through 7 become gradually more demanding, asking the student for more careful reflection. Speech Language Pathologists are encouraged to use their own judgment regarding how to include Making My Own Way as part of a comprehensive fluency therapy program. This workbook is not necessarily appropriate for every student. Some children are more insightful and willing to journal than others. Some students will be able to complete entries while others will succeed only with plenty of help. Some students should begin at level 1 and proceed methodically through each and every step. Others will be able to skip levels, using only the ones that are meaningful to them at the time. Time spent at each level will also vary for each student. Record the student s name and date on each page. Next, ask the child to select a speaking Situation. A situation consists of People, Place, and Time. Several options are listed on the left-hand side of the page. You can offer these options to a child but be careful not to put words in his mouth. Wait. Allow plenty of time for silent thought. He may have other situations in mind. If possible, write down what the student said as if writing a screenplay. For example: While trying to get a seat on a school bus, a child said, Can I sit here? A bully stands up and pushes the child down the isle. Other children on the bus just watch, silently. The child feels afraid and embarrassed. He moves to another seat. Place quotation marks around the student s words. This will emphasize the importance you place on what he is saying. You are looking for dialogue, emotion and action. Write down the Listener s Words and Reactions. Listeners reactions are a crucial piece of interpersonal communication. This is where you will learn how a child is perceiving people s reactions to his 15

20 thoughts and his speech. Include a child s description of the listener s facial expressions, tone of voice, gestures, and attitude. Your Feelings describe how the child felt during the speaking situation. In Level 1, only three simple options are listed on the left-hand side of the page. Of course, if the child offers more about how he feels, then go ahead and write this down. Unless you are a trained counselor, it is probably wise to simply acknowledge and record a child s feelings. Interpretations and further probing into emotions is best left to another professional. Emotions are included in this journal in order to discover if disfluency has been conditioned to certain internal states. (Emotions are omitted on the Level 4 journal entry just to streamline the page. Go ahead and include emotional information if at all possible.) Record what a child tells you with acceptance. Then ask a few questions to elicit more detail. As the child clarifies a situation for you, he may make important related comments. Write these down too. Remember that you are trying to learn as much as possible about a child as an individual. Then you can tailor your help to his very personal communication needs. Don t force the child to talk about things he is not ready to discuss. Move along at the student s pace. And remember that many entries should document successful communication. We are not looking for a pile paper that proves the child is as broken as he feels. We are private investigators, learning together about the ins and outs of communication, the joy and pain, the failure and the success. 16

21 Making My Own Way Level 1 GOAL: To become familiar with journal writing. Journals are documented memories of important events in a person s life. They can describe major milestones such as holidays, travels, births, etc. They can also preserve small details that might otherwise be forgotten such as first words, names of long-ago friends, and descriptions of daily life. This book is your personal record of your experiences when speaking and communicating. It is a journey journal that will guide you through the changes in your speech with your own words and descriptions. Level 1 contains the facts necessary for any journal entry the who, what, where, and when of the situation. Since this is your personal journal, it needs to include your feelings about each situation. You may use the suggested labels on the left side of each page, or your own words to fill in each situation. Note to the SLP: The elementary school age child may find it easiest to draw pictures. For example, when asking a first grader about his surgery experience, he drew me a picture of a Pokémon with an anesthesia tube. A third grader drew a picture of he and his friend playing PlayStation. Remember that our goal is to elicit from the child his perception of life. We cannot require that his expression conform to a specific format! The journal worksheet is only a guideline to get you both started. 17

22 Making My Own Way Level 1 Date Name People Family Friends Teachers Coaches Community Helpers Places Home School/Playground Inside/Outside Store/Mall People: Place: Time: Time Day/Month Time of Day Hour Season My words: Feelings Happy Angry Proud Listener reactions: My feelings: 18

23 Making My Own Way Level 2 GOAL: To include observations about the pragmatics of each entry. Level 2 adds another very important aspect of communication to your writing and observations: pragmatics. Pragmatics means social language skills. To understand this concept ask yourself the question, Was I trying to? (This list offers some, but not all pragmatic language skills.) 1. inform someone? 2. describe something? 3. ask for assistance? 4. disagree? 5. start, join, or end a conversation? 6. change the topic? 7. solve a problem? 8. use humor, tell a joke? 9. express concern, joy, frustration, or other emotion? 10. compliment someone or accept a compliment? 11. defend myself? Pragmatics includes the manner in which you communicate verbally and nonverbally in different settings with different people. For example, do you talk to a group of friends on the playground the same way you talk to a group of cousins at a family gathering? Watch others to observe the changes in their speech (vocabulary, intonation, volume, sentence length) as they talk to the doctor, baby, family pet, phone sales person, etc. When you recognize the pragmatics of others, you can begin to observe your own social language skills and record them in your journal. 19

24 Making My Own Way Level 2 Date Name Pragmatics Asking questions Public speaking Fighting Using the phone Ordering food Talking to authority figure Recalling an event Recalling a movie, TV show Playing a game Giving directions Explaining an idea Telling jokes Teasing Place Which room/class? Where are people? What objects present? What s happening? Feelings Happy Angry Proud People: Place: Time: Pragmatics: My Words: Listener reactions: My feelings: 20

25 Making My Own Way Level 3 GOAL: To find your own balance This section used to be about rating your fluency. But, we got so much negative feedback on this, that it is now about the concepts of balance and continuums. What is a continuum? It is easiest to explain by example. A thermometer is a continuum: a range of temperatures. A speedometer is a continuum: a range of speeds. A school grading system is a continuum: a range of performance levels. Balance is about staying within a healthy range on the many continuums of life. Originally, this level was about the fluency continuum. It encouraged you to observe how and when your stuttering changed. The assumption was that you would gain some peace in understanding why you could not just will fluency to happen, that your fluency was affected by situational variables. But let s suppose you observe, plan ahead, and practice according to the recommendations in this workbook, and still your fluency fails you? You might close this workbook feeling the fight was a fix from the start. The real truth is, there will be days when you ve done all the right things, yet you take a stuttering hit that knocks the wind right out of you. Shaken and dazed, you will wonder: Why is life doing this to me? Where did that bully come from? Why doesn t my Dad get off my back about being fluent? Man, I like that girl, but how could she like me when I can t even talk? I can t even use the phone to call for help. How can I live like this? Then, as if the stuttering weren t enough, here come your emotions. Now you are down for the count. You are out of control: angry no-rageful, sad no-down right depressed, helpless no-hopeless. It s almost time to give up. Almost. But not yet. Because you have a mind, a heart, and a soul reminding you about continuums and finding your balance again. And on the whispering wind you hear, Everything s gonna be ok. 21

26 Making My Own Way Continuums l-----l-----l-----l-----l-----l-----l A generic conintuum. never always l-----l-----l-----l-----l-----l-----l A measure of how the very fluent stuttering moment feels in tense the body. l-----l-----l-----l-----l-----l-----l How well do you accept helpless tough the help of others? l-----l-----l-----l-----l-----l-----l Life takes some courage. no dangerous risks behavior l-----l-----l-----l-----l-----l-----l Your anger will need an silent violent outlet or it will eat you up. simmer rage l-----l-----l-----l-----l-----l-----l Feeling free takes planning. rigid no goals plans When we accept that feelings are always there, all we have to do is take a moment to look for them. If you are disconnected from your feelings a lot already, this will take some effort. It can take a highly intellectualized person a year or more of regular practice to be able to readily identify what she s feeling. Once you learn to do it, your feelings will be come incredible allies that help guide you instead of tyrants that prompt you to do terrible things. Assume they re there, then notice them now and then. (Friel & Friel, p. 70) 22

27 Making My Own Way Level 3 Date Name People Family Friends Teachers Coaches Community Helpers Places Home School/Playground Inside/Outside Store/Mall People: Place: Time: My words: Time Day/Month Time of Day Hour Listener reactions: My continuums: Where am I? l-----l-----l-----l-----l-----l-----l l-----l-----l-----l-----l-----l-----l 23

28 Making My Own Way Level 4 GOAL: To describe and manage physiological reactions to speaking. What happens to your body when you want to talk? If you are a living, breathing human being, there are times when you feel scared, nervous, happy, sad, proud, or excited when you have something to say. And the way you feel affects your body when you talk. You need to know that emotions affect speaking. If you are excited, your voice probably rises in pitch and your words speed up. If you are confiding in a friend, you speak softly so not everyone hears. At a football game cheering for your team, you scream. When you are angry, it s likely your voice deepens, dropping in pitch. There are also connotations conveyed by voice quality. We all know the sounds of love, gentleness, caring as well as patronage, meanness, and sarcasm. These changes in your speech and voice are automatic physical reactions that enrich your words with meaning. In other words, your body often behaves in ways that are consistent with your thoughts, feelings and words to present a powerful, redundant message to your listener. Your listener takes in all of these signals in order to understand you. This complex message may be messed up by stuttering. When listeners hear stuttering they may think a speaker is unsure of himself or nervous. The thing is, for children who stutter, this is not the case. Some words do not come out at all or they come out scrambled like eggs in a fry pan. The listener gets confused, unsatisfied, maybe even upset. And so, for children who stutter, talking can become a frustrating and fearful experience. Right now, think of something frightening. What do you feel? Does you stomach hurt? Do your palms sweat? These feelings make sense when you are faced with a dangerous situation, e.g., an angry dog. These feelings tell you to avoid something that could hurt you. What about talking on the phone? If you get a stomachache when you want to use the phone, your brain is reacting to fear. You want to call someone, but your body is fighting you. If you understand all this and want to change it, then use this journal. Take control so you can say what you want to, 24

29 despite your body s objections. Take a look at the physical responses listed on the journal entry form for level 4. Recognize any? I vividly remember walking to a job interview, feeling weak in the knees. I thought I was going to fall on the sidewalk. I imagined that an ambulance would come and boy would I feel stupid. Humiliated, I would not only miss this interview but I would agonize about to another interview. For some people reactions like this are mild. For others, like myself, the reactions can be very intense. Start paying attention to how your body reacts. You cannot change your body s reactions until you know that they are. Here are some ideas to try out. Take slow deep breaths. Pay attention to your breathing. Slow it down. Take a few long, slow deep breaths. Count your breaths. This can help to elicit the body s own relaxation response. Positive Self-Talk: Say something reassuring to yourself. The negative chatter in your head can blow your feelings of stupidity, embarrassment and panic all out of proportion. Visualization: Athletes do it. Actors do it. Salesmen and politicians do it. You can too. Imagine your own success. Picture yourself in your head as a confident speaker. Stare down any feelings of fear you have while doing this exercise. Medication: Some people need medication to help them chill. Talk with your parents and family doctor about this one. Counseling: Getting help with your feelings from an experienced, sensitive psychologist can be very effective. Getting professional help can be a smart play. Keep in mind that you may have to educate your counselor about stuttering. Rehearsal: Practice, practice, practice. Actors and actresses do many takes of a scene before a film is in the can. There is no way anyone can do well without practice. What are you going to do when you stutter? 25

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